Hi
I was dx’d with PPMS in 2012, but have not seen my NHS Consultant since 2019.
I appreciate Covid/funding has had an impact, but I really need his advice as things have got a lot worse these past two years.
Or is this normal? (I don’t bother going to the GP because my wife is a doctor…)
Hope you’re all keeping well
I haven’t seen a neuro, or GP, for well over ten years and doubt that will ever change. No reflection on their ability, but nothing to offer the long term PPMSer and would just be a waste of everyone’s time. My body tells me all I need to know.
Of course, your situation is different and need some answers, so book that appointment.
I think you should be able to get a neuro appointment - perhaps ask explicitly for one, remind them of your existence!
In the past a lot of people with progressive MS have been effectively discharged, sometimes with their consent, on the basis that nothing could be done.
However, there may be treatment for symptoms that could help you, even if you are not eligible for a DMT. Surely that’s a reasonable grounds for an appointment. MS teams can also provide things like physio or occupational therapy (not just about job but about broader adjustments).
You may be eligible for clinical trials. And one day, if a DMT for PPMS does come along, you’d want to be on the radar and informed.
Hospital appointments take time and can be a faff to attend. But then, a lot can also be done remotely - phone appointments, for example, or appointments by videolink.
Maybe I’m just a bit bloody-minded but I don’t think people with progressive MS should just be shoved into the “too difficult” pile.
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I haven’t seen a neuro in about 6yrs and I not bothered, because I feel there’s nothing for me anyway. I keep my MS nurse upto date and my GP.
Jean
I think it is normal. 3 years for me but a physio or the urologist is more use to me right now. With SPMS or PPMS I personally think the secret is using your MS nurse well. And hey, if it’s important for your mental well-being to see your consultant then you should bloody well push for it. If not, then just get on with your life knowing they’re not able to do a damn thing and are probably just as frustrated by that as you might be! I reckon it can’t be easy to tell one person with progressive MS that there’s nothing else that can be done right now, let alone dozens!